Q & A From The Dying & Their Loved Ones 

Many thanks to David Kessler and Harper Collins for their permission to excerpt sections of David’s book "The Rights of the Dying: a companion for life’s final moments" for this section of answers to commonly asked questions about death and dying. David began working with the dying in hospice setting in the early 1980’s and has advised President Clinton on hospice issues. He studied with Elisabeth Kubler-Ross, and had visited with Mother Theresa at her home for the dying. We recommend David’s book strongly for those who are dying and their loved ones.

For the dying:

For those who love someone who is dying:

For those who love someone who is dying:

 

It seems so unfair. His life is being cut short by this illness.

Accepting that life is complete is perhaps the most difficult of the steps toward spirituality. We find it especially hard to accept death when it’s "premature." People will say "he was so young" or "she never got to retire" or "there were so many things that he never got to do," as if those lives had been incomplete. From our vantage point, it often seems so. It’s hard for us to accept that a five-year-old who dies from leukemia or a thirty-year-old felled by breast cancer has had a complete life. It’s only when the deceased is eighty or ninety years old that we allow ourselves the peaceful feeling that they had a complete life.

Every life is complete. The only two requirements for a life to be complete are birth and death. People may say that life isn’t complete without a family, or a career, or a certain number of years, but whether we like it or not, birth and death define a life….There may be things we wish had happened—more time, more opportunities, and more experiences. But their absence doesn’t mean that a life was incomplete.

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I don't know how to act around him.

The dying want to be treated—and they have the right to be treated—as living human beings until the moment they die. But often we "bury them alive" by thinking of them as their diseases, by acting as if they are incapable of making their own decisions, by negating their opinions, by overlooking their desires, by withholding information from them, and by omitting them from conversations. Without realizing we are doing so, we rob them of their dignity, we rob them of their hope, and we rob them of their very humanity. While we should never deny that the dying are dying, we should also never treat them as broken or no longer whole. Despite their illnesses, despite the fact that they are dying, they are still whole human beings. Life ends at death, we must always remind ourselves, not a moment before. To do any less than treat the dying as living human beings until death is to take from them their self-images, their stories, their hopes, and their dignity. We must continue to see them as they see themselves, to listen to their stories, to support their hope, and to treat them with dignity. We each carry an image of ourselves in our heads. It’s "who we are" in our minds, a picture formed before we grew older, when we were most full of life. We see ourselves as something that transcends what we’re going through. And we continue to see ourselves at our fullest times of life no matter how old we may be or how ill we have become. We cling to that part of ourselves that is indefinable and changeless, that does not get lost and does not deteriorate with age or disease.

What we see when we look at her is disease and impending death and so often we refer to her as "my dying mother" when we ought to say "my mother, who is dying." Thinking of her as "my dying mother" limits her, in her mind and ours. She is and always will be a compete human being who happens to be dying.

We tend to forget that dying still have stories to tell. Just as the healthy tell bits and pieces of their stories every day, people facing life-challenging illnesses want to tell us who they are, what they did for a living, about their families, their hopes, their dreams, their regrets.

Listening to the stories of the dying brings out their dignity and humanity. They have beautiful images of themselves, filled with stories to tell. We must continue looking and listening, until the end, for their sake and for ours.

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What do I do if his appearance is difficult to look at?

Often we find ourselves distracted by a loved one’s physical appearance. It is common to feel terribly uncomfortable at the sight of a loved one disfigured by illness or accident. The best thing to do under those circumstances is to look into the eyes of the loved one and see those changeless brown or green or blue eyes. Even when the body has deteriorated, you can usually see the person inside by looking into the changeless eyes.

Seeing beyond the illness is one of the most meaningful gifts we can give them. It is a greater gift to ourselves.

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He seems to be clinging to hope of a cure. Should I try to stop this denial?

Our lives are based on hope. It is also the primary way in which we try to control death. We try to control the "when" of death with the hope for a cure. When we lose that, we hope to control how, where, and with whom we die. We hope that we won’t lose control over our lives as we move into our last months or day. We hope that it won’t hurt too much. We hope that our loved ones will be able to get along without us. We hope that we won’t be alone at the end.

Hope and fear grip everyone who struggles with a life-challenging illness. The two emotions are as inevitable as they are constant, right up to the moment of death. If we take away someone’s hope, we leave them with nothing but fear.

As long as we’re alive, until the last moment, we can have hope. It is our right.

Unfortunately, we often diminish that hope by negating, by judging, or by denying. We rob the dying of their right to hope when we insist that they "face reality," or when we plead with them to "stop looking for miracles."

Hope is a journey not a destination; its value lies in the exploration. Hope is the way we live, and the journey of hope should last until we end.

This is very hard for loved ones and the medical community to understand. Our thinking is limited: we only see hope in a cure and we feel hopeless when we believe there is none. The dying, however, see the value of living hopefully rather than hopelessly, and that is why they choose hope as their companion on the final journey. Many find hope in support groups, where a shared hopefulness improves the quality of life. Others find hope in faith and spirituality.

Hope and reality needn’t clash. You don’t have to tell lies in order to keep hope alive. I’ve sat with hundreds of people who were in their last days, hours, or minutes, and I never once said, "There is no hope." Instead, I say, "It looks like you’re gong to die but there’s still the possibility of something happening. It’s okay to hope."

Hope should always be cultivated and never challenged. We can live for weeks without food, days without water, but we can only live hours without hope. As long as it is nourished, hope is like a strong vine that can grow over and around obstacles. There are so many obstacles standing in the way of our loved ones’ having hope that we needn’t add more by being "realistic" or by playing "devil’s advocate." Allow those who are challenged to find the paths that are best for them. Help them use their hope well.

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How do I know if he has the right doctor to be supervising treatment?

Just as the dying have a right to hope, they also have a right to be treated by physicians and nurses who can maintain a sense of hopefulness, however changing this may be. Finding doctors who are good at inspiring hope can be difficult, because medical professionals have been taught that death is the enemy, that they should "fight, fight, fight!" until the end. To many of them, death is the opposite of life, a terrible scourge to be destroyed, a failure—their failure.

Some otherwise good doctors destroy their patients’ hope by telling them not to seek alternative treatments. Other doctors, unable to study and adopt every new idea that comes along, still remain open to new possibilities. When the AIDS epidemic began back in the early 1980s, many of the cancer and infectious disease specialists admitted that they had no answers and were willing to let their patients explore alternatives. If asked about other treatments, they said: "I don’t know about the alternative therapies you’re asking me about, and I cannot endorse them. But please let me know if you try them and I’ll monitor your progress and your lab results. We can learn together." This approach helped to keep hope alive and helped many people to improve the quality of their lives

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Should we discuss the medical decisions to be made with him?

As people’s physical condition deteriorates, their rights should not. We tend to equate a loss of physical capability with a lack of mental and emotional capabilities, and then we treat the dying as less than the living. Being unable to speak anymore, for example, does not mean that you can no longer think. That’s why doctors, nurses, and physical therapists are trained to talk to comatose patients as if they were fully functional human beings.

Being treated with dignity means being included in conversations about one’s death and the decision-making process. We often try to protect the dying by excluding them from these conversations. We go out of the room to discuss what we’re going to do with Mom, for example, feeling as if we’re somehow protecting her by not allowing her to know about and participate in the discussions about her care. But we’re not protecting her. Whatever happens as a result of that conversation, happens to her. We actually harm Mom by denying her the right to make her own decisions, by acting as if she were too fragile or incompetent to participate in her own life. We strip her of her dignity and her rights as a human being by leaving her out of this process.

Despite their illnesses, despite the fact that they are dying, they are still whole people. Treating them as such preserves their dignity and their hope. Human beings deserve tenderness, dignity, honesty, compassion. And most of all, they deserve an acknowledgment that life ends at death and not a moment before.

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I'm having such difficulty emotionally dealing with the knowledge that he will die. I just don’t know what to say.

We tend to have trouble expressing our emotions and feelings in the best of situations. We have even more difficulty accepting the feelings and emotions of others. These feelings become even more difficult in times of crisis, when our fears are realized and our feelings are raw. We are afraid to express ourselves. We fear we’ll be abandoned, and we fear that our feelings will be bottomless. But if we express ourselves during the dying process, what we share during these difficult moments will be our greatest comfort later.

We have a primal need to express feelings. As death approaches, the need to share and to speak from the heart grow. We rob both ourselves and those around us when we erect barriers to intimacy. It is not only the job of those who will live to comfort those who will not. Just as we comforted each other in life we should continue doing the same as death approaches. Even though we don’t know how to say good-bye and we don’t want to say good-bye, if we can break through our reluctance and find the courage to express our emotions, we can bring our relationships to new levels. We can complete them. Sharing emotions while grieving together is not surrendering to death. Grieving in each other’s arms can raise us to new heights of intimacy and love.

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Should I talk about the fact that he’s dying with him?

Our tremendous discomfort with death can make it difficult or impossible to talk with a dying person about what’s happening. Many times, family and friends talk about everything except the fact that someone is dying. I often go into a hospital room, alone with the patient and ask: "What’s happening?" Many of them calmly reply: "I’m dying." Others are sarcastic or angry or frightened, upset that I seem to have missed the obvious. But in every case, the topic of death is opened. When I say, "Your family and friends think that you can’t talk about dying," they usually replay, "No, they can’t talk about it." And then we have discussions about disease and dying that later amaze their families. They wonder how their loved ones can talk about death with a total stranger, but not with them.

You never know what someone needs when going into a conversation. The person you are talking to may not know either for dying is always a new experience. The emotions of the person who is dying may change from day to day or moment to moment.

It’s all right to talk about dying if the person is receptive. Each situation has to be gauged individually. Not talking about death won’t make it go away, but talking about it can bring life back into your relationship. Talking about death is like stepping into uncharted territory. It can be liberating and cathartic.

Sometimes there can be too much talk of emotions and pills and surgeries and death and dying.

There are no rules, except to play it by ear and listen to what the dying have to say.

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How can I help him the most?

Allowing the dying to be heard is one of the greatest gifts that we can offer them. Medical professionals are taught that listening is a way of gathering information and assessing a patient’s physical and psychological condition. Even more, listening itself is a powerful way of giving comfort.

Listen to them complain. Listen to them cry. Listen to them laugh. Listen to them reminisce. Listen to them talk about the weather or talk about death. Just listen.

People who are facing life-challenging illnesses will tell you everything you need to know: how they feel about their situation and---if they’re comfortable talking about it—how they would like to die.

As we listen to those facing death, we hope that they will share with us their beliefs and thoughts, perhaps comforting us. But sometimes what they tell us doesn’t comfort us. Sometimes we don’t agree with what they tell us; sometimes we are disturbed to learn that their ideas on death challenge our own. Remember that the dying have the right to believe what they want and to express their feelings about impending death in their own way, even if their feelings are heartbreaking or devastating for us to hear. It is their right to live and die as they choose.

We can cry with our loved ones, we can analyze treatment strategies, we can disagree, and we can deny the situation entirely, but in the end, the best thing we can do is to listen. And when they tell us that the end is near, we need to listen even more carefully.

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He doesn’t respond even though he is alive. Can he hear me?

Ultimately, we will cease to have the luxury of verbal communication. Due to illness, unconsciousness, or the nearness of death, our loved ones at some point will no longer be able to speak. Many assume that they no longer hear as well, simply because they don’t seem to respond when spoken to. At this point, many people say that they wish they had said this or that, or had said "good-bye."

It is widely believed that hearing is one of the last senses to go, which is why medical professionals are taught to behave as if patients can hear right up to the end. When people ask me if their loved ones can still hear them, I always answer yes. If not physically, then they can hear you spiritually. They may not be alert, but if you say something from your heart, they will hear it in theirs.

You can still say what you wish you had said, even if your loved one is in a coma. Say it out loud if you can; if circumstances do not permit speaking out loud, say it in your mind. Much of our communication is nonverbal. Much can be said with a smile or a touch.

When you do talk to them, share your thoughts and feelings. Tell them things that would be of interest to them, such as the latest news or stories of mutual friends and family. Sometimes you may do a lot of talking, other times you may not. Don’t be afraid of the silence. Holding hands or even just sitting nearby can communicate all that needs to be said.

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He and I have some old "issues" that we never addressed. Now that he’s dying, I don’t know if I should say anything about them.

Even though they may be difficult, the last days you spend with your loved ones are ones you’ll remember vividly. At times you may feel as if you’re walking on eggshells, but everyone should be allowed to say what needs to be said. This is a sacred time because of the authenticity of the emotions that occur. We must let ourselves and our loved ones express feelings and emotions, no matter what the reactions may be. I am often in awe of expressions of feelings between the dying and their loved ones. These feelings are among the purest found in life. Honoring these expressions is a holy obligation we have to each other.

At every stage of life, we find peace and fulfillment in our relationships that are current. A current relationship is one in which both have said everything they need to say to each other, whether it is supportive or challenging. Our relationships are current when we no longer harbor unexpressed feelings.

When there is a blockage in the relationship, however, when things have been left unsaid, we are bound to be uncomfortable and unhappy. That blockage and discomfort are most pronounced when things have been held back for years and someone is gravely ill. Ironically, most of us are less likely to make a relationship current when a person is ailing, for fear of doing harm. But if those unspoken thoughts are not expressed, they may never be. The urgency of illness is a golden opportunity to push through ancient blockages and talk openly and honestly.

There is a difference between getting it out and getting even. You can express negative feelings without hurting someone.

It is a deeply moving experience to be comforted by the dying, one that can be extremely important to them. I remember saying to my father, shortly before he died: "I can’t imagine a world without you."

We tend to look for comfort outside the sickroom and away from our loved ones. But we shouldn’t deprive them of chances to be loving people. That’s what they wanted to be in life, and that’s what they continue to want to be until the end. By opening up we include them in our life and our grief. We are honest with them, and we honor them with honesty.

Family members encourage each other to keep stiff upper lips, not to openly cry or grieve. I always suggest the opposite: Share your grief. Cry in front of someone, and cry with them. Witnessing grief gives the witness permission to grieve.

It’s not a matter of if you will grieve, but when you will grieve. Don’t miss the opportunity to grieve with another who shares pain. Those who grieve well, live well.

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I know that he didn’t want to be kept alive by artificial means, but I feel like I’m ordering his death by asking the machines to be shut off.

It is natural to feel guilty about turning off respirators or other medical equipment. Many people say, "I want them to die naturally, not because the respirator was turned off." We forget that respirators are artificial. Feeding tubes are artificial. The most natural thing in the world is nature taking its course.

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How do I know when death is near?

Dying is like shutting down a large factory filled with engines and assembly lines and giant boilers. Everything does not suddenly go quiet when the "off" switch is pushed. Instead, the machinery creaks and moans as it slows to a halt. Unless suddenly felled by an accident, a heart attack, or other sudden trauma, most of our bodies are like those factories, creaking and moaning as they shut down. It can be difficult to remember that the winding-down process is natural. No matter how prepared we think we are for death, we do not let go of life easily.

Death is as primitive as birth. Often loud and messy, it is always deeply authentic. We can find peace and dignity in this authenticity.

Some of the common signs that death is near:

 


Even though watching someone physically die is an emotionally painful experience, most people feel as if they have shared a precious and profound moment with their loved one. Take your time. Many people believe that the spirit is still close to the body immediately after death. Talk to her. Hold her hands, Caress her. Pray for her. Wish her well on her journey. Do what feels right for you. Even though the physical connection has just ended, the emotional connection continues.

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How will I deal with the grief and deep emotional pain of losing someone I love?

I understand how hard it is for you to watch someone you love slipping away. The pain is excruciating, the feeling of devastation unmatched by anything you have ever known. Losing a loved one is one of the hardest experiences any of us will have to face, but there are some things that you can do to make it easier on yourself and those around you.

 

I wish you peace and healing.

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What are the rights of the dying?

 

For the dying:

I just found out that my disease is terminal. What do I do?

Ask yourself what your goals are as you enter into the final phase of life. Do you want:

 

The decision is yours to make, and whatever you decide is correct for you. You have the right to make any and all decisions concerning the way you die. No one can take the right to make those decisions away from you, but first you must claim that right.

Whether or not you’ve decided to participate in your care, and whether or not you’ve learned all you can, you have the right to expect continuing medical care, even if your goals change from month to month, week to week, or day to day. You may make one decision when you first get the diagnosis and quite a different one after six months of chemotherapy. You may begin by insisting on "cure" goals and later realize that a cure is not possible and choose to adopt "comfort" goals. Perhaps you’ll move in the other direction, changing your "do not resuscitate" (DNR) order to "do everything possible to keep me alive." Your latest decision is the only one that counts. You have the right to change your mind, and your changes of mind should be honored.

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What if I don’t want to live on machines?

If you find it difficult to talk about your wishes, you can express them on paper via documents known as Advance Directives or Durable Power of Attorney for Health Care. These documents speak for you when you cannot. They allow you to specify the level of treatment you wish to receive, anything from full heroic measures to nothing but painkillers to keep you comfortable as you pass on. You can also designate a proxy, a person who will make decisions for you when you cannot. Unfortunately, having an Advance Directive may not be binding if your family does not agree with your wishes.

It’s important to select a strong representative to safeguard your wishes, someone who will stand up for you, under pressure, even if they disagree with your decision. Your first instinct may be to assign that responsibility to the person closest to you, but that person is not always strong or decisive enough to carry out your requests. It’s also vital that you discuss your wishes with this person before designating him or her as your proxy. Express your feelings clearly. Let her know that you consider her help to be an act of love. Emphasize that she is giving you something, not taking anything away. Emphasize that the disease will kill you, not the directives, not the decision she may be called upon to make.

Make sure your proxy has a copy of your Advanced Directives, and also give a copy to your doctor to place in your chart when you go to the hospital. Let your family know where they can find it quickly and easily. Bring your family together for a discussion early on in the disease process, or before you even get sick. Show them your Advanced Directives, let them hear your wishes clearly, and discuss their concerns. Discuss them now rather than over your hospital bed. It will be too late when you are in a coma, at which point any relative may insist that you be kept alive, and the doctors will have to keep the machines on. Afraid of being sued, the doctors will err on the side of doing too much rather than too little.

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I am afraid that I will die in pain. What can be done?

With modern pain-relieving agents available, no one should have to live or die with pain. Our medical providers have a duty to do all within their power to relieve pain, for the dying have the right to be free of pain. With proper medication and management, pain can be relieved most of the time.

Although pain is a part of the death process, there is an arsenal of pain medicines with which to quell it. But even in hospitals, surrounded by brilliant physicians and dedicated nurses, too many of the dying are still not given enough medicine. The problem is that there are rules. Patients and their families and friends are puzzled and frustrated by nurses who say that no more medicines can be given until such-and-such time.

Nurses care, but they often don’t understand how you are feeling. That’s why constant reassessment of your pain is suggested. A patient’s pain and the efficacy of treatment should be continually monitored. Pain should be assessed:

Doctors worry about patients becoming addicted to powerful painkilling drugs, as do many patients and their families. But the fear of addiction is largely unjustified. The number of people who actually become addicted is small, some believe as small as one percent.

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Do I discuss my illness with my children?

If you will be leaving children behind, you are facing a parent’s worse fear.

Child specialist Kathleen McCue suggests that you do three things. Tell your child that you are seriously ill, name the disease you are struggling with, and tell them what you think will happen. Don’t offer more information than is asked for, and let them ask questions at their own pace. If you feel that you will not get better, explain who will take care of them and how. Remind them that even though you will soon be gone, they will always have memories of you, that they’ll never forget the times you had and the love you shared. Tell them that these times and the love will live forever.

Some parents write letters or make videotapes for their children. Even though they’ve passed on, parents can remain a part of their children’s lives.

We hope that the words we leave our children will continue to comfort them, that they will be symbolic of how we lived and how we died. The teaching we do now will help shape our children’s perception of loss, affecting many generations to come. We spend a great deal of time teaching our children about life. This is a profound opportunity to teach them how we care for loved ones in their last days, to help build their belief system around death and loss rather than leave them with a mystery, and to model for them how we honor the memory of our loved ones.

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What about God? Is there a lesson I’m supposed to learn in this?

Some people believe that if they become spiritual enough, they will be able to cure their diseases. That, however would be magic, not spirituality! Spirituality is not a cure for disease. It’s our reconnection with ourselves, with others and with life, eve in the face of death. It is our seeking of peace.

The quest for spirituality is a search for a place of peace and safety. Many people begin looking for this place during the final chapters of their lives. They may do so through religion, on their own, or both. Whatever approach one chooses, it should be honored and supported, even if [others] think it is "incorrect."

Upon developing a genuine desire to explore their spiritual selves, people go through five stages of spiritual reconciliation:

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